Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
Over four years ago when we considered giving up on our son Chance’s life, I wrote openly about the emotions and decisions we were faced with. In part it helped me cope but I also did so for support. Instead, majority of the responses lead an attack that helped me realize just how touchy of […]
My wife and I was notified yesterday that our son will have spina bifida. Test show that our son apparently has one of the serious cases of spina bifida. Reading this has helped a lot and to also show that we aren’t alone. We have the same tough decision to make.
Congratulations for the post Amanda, I think the world needs a lot more people to enlighten the great potential of kids with spina bifida and other conditions. I went through the same situation that you did, also feared so much, but also wanted so much to keep my baby. Like you, I also looked for every single updated piece of information I could get, and I was also advised to consult with a paediatric neurosurgeon – we were lucky to have an extremely reknowned and competent one. Only in my situation, the MRI looked completely different from your case. Whereas he reassured us that individuals with SB had a great potential and so much progress had happened in improving their quality of life (even commenting that one of his best friends, a University professor, had spina bifida), he also told us that unfortunately ours was a worst case scenario. He said the damage to the brain stem caused by the Chiari II was so severe that it was almost certain that our baby would not be able to breathe nor eat on her own among countless other severe impairments. He said that, contrary to the vast majority of cases he had, he expected her to live only for a few days (even with all hospital assistance) or for a couple of years in the best case scenario for her. Facing that, we decided to have a termination, and we do not regret it. Based on the best and most accurate medical evidence, we would have to watch our daughter agonize until she found peace in a very early and cruel death. I don’t share this here to discourage those mums faced with this impossible decision, just the opposite: before this MRI, I was resolved to raise this child and to fight for her, and even now that I don’t have her, this cause became a fight of mine. I totally agree with you that the information given to parents is precarious: our paediatric neurosurgeon said that only a few per cent of parents look for this kind of specialist advice, and most seem to decide right away after the first diagnosis, without further investigation. After living what I have lived, I am past feeling comfortable in judging people for whatever they decide – as long as this was a really informed decision.
I was never upset with you for considering termination. It was the taunting of the sb group and your poll. Your poll. Then you named him chance. I see you’ve come around a little, but wow. You came and told us that women messaged you wishing they’d aborted.
My wife and I just learned as of this week at 22 weeks that our son has Spina bifida with hydrocephalus. She’s so worried about our own relationship at this point and cannot focus on what matters with this child. I’m totally set on fathering this child and have made contacts with Houston Texas Children’s for fetal surgery. I’m so scared that she’s going to choose abortion rather than life.
As a wife of a man who has Spina Bifida I have learned from him that his life hasn’t always been eady. He’s had pain, surgeries, and other issues but he has also had a happy, fulfilling life, is a sports buff, and has even played some basketball. Personally, I’m happy he has had a chance at life.
Are you still available to help me?
As a mom of twins one of which has SB I would add another useful tip.
Find support.
Join a Internet support group or meet up with other SB kids and families in your area.
I found a BabyCenter group of SB parents. It’s been useful over the past two years after diagnosis day. They have been the best resource for our family apart from our medical team who have taken care of our daughter with SB. I didn’t bother to call our SB clinic or local chapter of our SB association because the information is woefully inaccurate.
Plus information overload. FS was not a option for us and I briefly considered termination after diagnosis day. Our little gal with SB and clubbed feet is a bright and healthy baby. She is exactly like her twin brother (Laurel’s partner in mischief making). Both of them are currently 18 months old now.
As her mom I am amazed by the love and support she inspires amongst our extended family. Coworkers who have met my children are always amazed at our little gal and what she can actually do. She has some physical impairments but I feel she is on track with her cognitive and speech development.
Her small motor skills are assumed to be above average as well. My partner worries about her but I reassure him she will be fine.
Hello thanks for the information we were just informed our baby boy has spina bifida
Wow what a wave of emotions and processing my 1st scream was how am I going to do this? We are in the process of considering the MOM surgery end of this month. But boy and I’m I scared and I feel like there’s so much information
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by Amanda Kern
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